5.25.2012

I'm sorry these posts have been far and few between. A lot has happened over the last few months and at the end of the day I'm so tired it's hard to find the motivation to sit down and rehash it!

Lillian is doing really well. She went through some "terrible two's" during Eric's newborn stage and I think putting her in part time MDO might have made it worse (although at the time helped me keep my sanity). She picked up some bad habits and was spoiled rotten by the staff, but thankfully she has returned to the sweet girl I knew the first 24 months of her life :).

Right now Lillian is getting therapy 5 times a week. She gets speech therapy twice a week, once in home and once through a private therapist. She also gets occupational therapy, physical therapy, and developmental therapy once a week. Even though we are consumed in therapy much of the week, we are also thankfully consumed in our social life as well. I've joined a fabulous mom's group through the church we go to, and Phil and I also teach the 2 year old's Sunday school class every other Sunday. I'm also part of another women's group at church that meets once a week, so Lillian and Eric get to spend 2-3 mornings a week with other kids their age at church. The volunteers there are good friends of ours and the kids absolutely LOVE it! Not to mention, it's been so good for me to get some adult interaction after 2.5 years of being so wrapped up in therapy and PWS.

This spring has been so refreshing. Lillian is finally able to navigate most playground equipment and I'm able to just stand back and let her run and play. She climbs up the stairs, goes down the slides by herself, and makes friends along the way. What a breath of fresh air that is compared to last year! She's also been spending time on our family farm with my Father in Law. My goodness does that girl love tractors! Keep in mind her idea of a tractor is one with an enclosure and air conditioning, but nonetheless, she has her grandpa wrapped around her little finger and manages to get in on quite a few rides bailing hay.

When she's not hitching rides on tractors around the farm, you can find her with my Mother in Law checking out the hatching chickens/turkeys/geese in the incubator, or over at the neighbors barn petting the horses. I think she's going to be VERY involved in 4H when she is old enough!

Right now Lillian is having a bit of a speech blossoming. I wouldn't call it a "speech explosion" because like everything else with her development, it tends to be slow and steady. She has started saying "hi" "mo" (more) and still says mama and occasionally dada. She says "oh yeah" "hi buddy" "I awn that" (I want that) and "openit" (open it). It's NOT always easy to understand her, but we've noticed these things she's saying now she has probably been saying for a long time, we just couldn't understand her. She will imitate the sounds ssssss, ooooo, eeeee, wwww, ba, da, ma, consistently. Inconsistently I can get her to do the p sounds.

I think the twice a week therapy has helped, as well as adding in some prompt therapy and some other methods that the private speech therapist has integrated into therapy. Another thing that I'm now convinced has helped her speech blossom is adding B12 back into her supplement routine. Before adding B12, I stopped giving her carnitine and coq10. So currently she is only getting HGH and B12. After a few days of giving her B12, she started to seem more in tune to what was going on. She was able to match all of her puzzle pieces accurately, started saying more words (she was only saying no and mama before we started B12), and she is now able to pick up new signs very quickly. She's learned to sign horse, on, potty, and she also uses the gestures we're teaching her in therapy to help her with sounds. At first I was really skeptical about the B12 being the connection to these new developments, but after her therapists went on and on about how mature she has been in the last few weeks and how she seems to be absorbing so much more and focusing better on tasks, I finally started to accept that the B12 had to be doing something. If you ask her OT, she's like a completely different kid! She's also sensory seeking less and saying "no" less... which is nice. If anyone has questions about B12, you're welcome to leave a comment with your email address and I'll answer any questions you have! I do plan on introducing carnitine and coq10 back into the daily routine one at a time. I'm wondering if one of those might lead to irritability, so hopefully I'll be able to see that clearly.

As for now during the summer, we're looking forward to lots of days spent at the pool, park, farm, gardening and traveling. Our plans to build a house over the summer have changed and it looks like we might put it off another year or so. We want to make sure we do everything carefully and with as little stress on our family as possible. In the meantime we're just going to keep doing this...

(Sorry for the crappy cell phone pics!)

And last but not least, Running for Lillian 3.0 is in the works! We have the donation page set up and are adding more runners as they commit. If anyone is interested in Running for Lillian in their own home town or in the Indianapolis Marathon, please leave a comment or email me and I'll get the information to you on how you can be part of the big day! All donations go to FPWR and the One Small Step campaign. You can find the information here:

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About Me

Hi! This place is where I write down random thoughts and keep track of life's moments.
I try to be an open book and will answer any questions you may have about Prader-Willi Syndrome or being a parent to a child with special needs. I will be the first to tell you to enjoy your life, regardless of the cards you've been dealt!